Thursday, April 3, 2014

Waiting for a Date...

Last we heard, Maia's team of Drs had agreed that her next heart surgery, the Glenn, would happen in about 4-6 weeks, when she was around 8 months old... it's been about 2 weeks since they mentioned this. This week we were informed that Maia would be presented again in the next cardiac conference on Tuesday. This means that the Drs and surgeons will most likely set a tentative date for her Glenn surgery!! They will also decide on any other pre-op procedures, if they feel she needs any. Having her presented at this conference is a big sign that the surgery is coming soon!

In the meantime, Maia has been working on some other things while waiting for her next heart surgery. Last week they downsized her trach from 4.0 to 3.5. The change in size seemed very miniscule, so it didn't bother Maia at all. Then a couple days later, Dr. Nielson, a pulmonologist (respiratory/lung Dr.) performed a bronchoscopy. This procedure allows the Dr. to look inside the airway by inserting a bronchoscope (thin, flexible tube) through Maia's nose, down her throat, and into her airways. This scope has a light and a camera to take pictures and video of the airway. So Maia was given some sedation that still allowed her to breathe on her own so that they could see what her upper airway looks like. They were hoping to remove her trach for a few seconds to see what happens, however, Maia had other plans! (As usual!) We were all able to see that her upper airway was clear and that the surrounding tissue was nice and not irritated despite all the suctioning that she's been needing. We were also able to see that there was room around her trach tube for some airflow... so we wondered why she wasn't able to make any noise. The Dr. tried to insert the scope further down, but Maia was so protective of her airway that she wouldn't allow the scope to go through! So they ended up giving her some anesthetic, propofol, that knocked her out completely. Only then were they able to check out the rest of her airway. Everything looked good, so the only explanation that made sense was that the tissue surrounding her airway might be collapsing, not allowing air to flow through it. Therefore, there's no air reaching her vocal cords to help make some noise. Maia's bronchoscopy results were looked over by an ENT (Ear, Nose, Throat Dr.), the same one that performed her tracheostomy (put in her trach tube)... he said the best way to strengthen her airway is to give her time to grow, and allow things to happen naturally. Otherwise, they would strengthen it by surgically adding some cartilage, which is something they do for older patients. So only time will tell....

Maia with the scope in her nose
Dr. Nielson performing bronchoscopy

Maia has also been exercising her vocal cords with the Passy-Muir valve. It's a one-way valve that is placed on outside opening of her trach tube and allows air to pass into the trach, but not out. When Maia exhales, the valve closes and forces air to flow around the trach tube and through the vocal cords, and out through her nose and mouth, allowing sounds to be made. The first time Maia tried this valve, she didn't like it at all! She built up so much pressure that she popped the valve off within seconds! But she's slowly getting used to it... she started out managing only about 2 minutes, and in just a few days, she is now able to keep the valve on for 20 minutes! It's the only time we get to hear her cry. She's getting used to it and is slowly starting to look more comfortable each time she has it on. Lately, she'll cry for the first few minutes, then she'll suck on her fingers. She also gets distracted when she watches TV, so she doesn't cry as much. Her occupational therapist wants to see how she swallows next, by giving her a wet pacifier soaked in some green food coloring. This way we can see what she does with the extra fluid in her mouth. We're not sure how long she will have her trach, so learning how to swallow during this waiting time would be a big plus!

Here is a video of us hearing Maia cry for the very first time!
(Click here to watch the full video on the Heart of Maia Facebook page)

There was also some excitement earlier this week... Maia was on the front page of the Bay Area section of the San Francisco Chronicle! They did a piece on her musical therapist, Oliver, that included Maia and a couple of other patients. It was a pretty big picture and when we showed Maia, she stared right at Oliver's face! We're so happy that Oliver is being recognized. He does so much, and means so much to the patients! He has such a gentle disposition about him and is able to connect with each patient, even young ones like Maia. In fact, the day Oliver came by with the Chronicle journalist, Maia had just finished her bronchoscopy and was still very much out of it. The Dr. had made sure Maia was breathing on her own and we had spent the last few minutes trying to wake her up. So we thought it was perfect timing that Oliver came by because Maia wasn't responding to mine or the nurse's pleas of "time to wake up!" With Oliver's first strum of his guitar and his gentle voice, Maia's eyes immediately opened!!! It was so magical it almost brought tears to my eyes! She was obviously still a bit groggy from the drugs, but it didn't take long for her to focus on Oliver's face and guitar... we're not sure what she loves more, the music or Oliver himself!... we'll call it a tie!

Check out the full article in the SF Chronicle and SF Gate (online) by Mike Kepka.
Music soothes body and spirit at children's hospital

Maia checking out her pic with Oliver in the SF Chronicle
Monday morning with Maia, Oliver, & Philz

So for now we patiently wait... again. Sounds horrible, doesn't it?! Of course things could be better and things could be worse. But I believe we are where we're meant to be and that God has a bigger plan. Hopefully next week we will have a surgery date to look forward to! For now we continue to enjoy the somewhat uneventful days that go by. The definition of uneventful is always a good thing where Maia's concerned! We've had our share of days and weeks filled with too much drama and excitement! It's so nice to relax and enjoy our time with Maia... it makes us realize and appreciate just how blessed we truly are!

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